My Response to, “What Happens When Lyme disease Becomes an Identity”
Let me start this post by saying that I write this from a place of love in my heart and I am fueled by inspiration and support from the millions of people suffering with Lyme disease, a handful of which I have the chance to interact with on a daily basis.
I am not a hateful or an angry person – if you know me, or listen to my podcast, or read this blog, then you know I am actually the exact opposite.
I also make a huge point not to dwell on the negative in any situation, and after being slaughtered by the media years ago for my journey in and out of veganism, there are very FEW things the media can say or do that have the ability to affect my heart on a deep level.
What I will say is, when you mess with a disease that I suffer with every day of my life, that is killing people, paralyzing people, stripping them of everything they deserve in life and affecting their families/spouses/friends and then some, you’ve got another thing coming.
You do not fucking mess with that and get away with it. Mess with me, I will turn the other cheek. I am stronger than that. I have a happiness and a joy that exists inside of me all of the time ALL ON MY OWN, and it is absolutely fucking unshakeable. Mess with the disease I suffer from and the millions of people who struggle to have their voices heard due to this disease, and I will speak up. EVERY time.
NY Magazine, The Cut, Molly Fischer, who I spoke to on the phone at length, I am looking at you.
To give a little context for those who are not aware (and if you don’t have Lyme or read NY Mag, why would you be?), a few weeks ago I was asked to participate in a story for NY Mag & The Cut about Lyme disease.
Of course my immediate answer was a yes. I know that the media has a tendency to spin things in a wild and salacious way, and I most certainly should have asked what the angle of this article was, but when given the chance to share my Lyme disease journey with a large audience via a large magazine my initial reaction was a yes.
My other thought was: Even if the media is not always to be trusted, I can do my part and share my story. My story can’t be twisted, because I will speak my truth and at least my piece in the article will showcase someone who has had their life ripped away from them by this debilitating disease. I owe this to other people suffering and it is my due diligence to raise awareness.
In other words, I am confident enough in what I have to say about this journey with Lyme that no reporter can minimize that. I am passionate about raising awareness for a disease I live with every day that is so deeply misunderstood. So yes, I will participate.
Cue to my conversation with Molly Fischer a few days later. I had only 30 minutes to speak with her because my energy is next to zero nearly all of the time, and I try to save most of my energy for the people in my life, my healing, and my business. I never take long phone calls, especially with reporters – but I felt 30 minutes would suffice for me to share enough about this debilitating disease, my diagnosis, and treatment for the sake of raising awareness and helping others.
The conversation was strange from the get go. I try to make a friend in every situation, I can’t help myself, I feel like that is what human connection is about. It was clear right away that Molly Fischer was not going to be my friend, or be even remotely friendly with me. No big deal, I wasn’t going to judge, I had no idea what was going on in her life or what her day was like.
I spoke passionately and in great detail about my journey. When I mentioned things like my water fasts at True North health center along my healing journey, Molly piped up. “Did your doctor send you on those?” “For how long did you fast?” etc. and I could feel the salacious journalist in her growing excited.
Then again, I am not one to shy away from telling the whole TRUTH. So I shared about my water fasts, well knowing they’re not what mainstream medicine would support in killing Lyme or any disease. That doesn’t mean they didn’t help me, or thousands of other people. In fact, talking about it in detail with her was rather irrelevant. Of COURSE the water fasts are one of very few things Molly chose to focus on when it came to me in this article, but we’ll get there.
On the phone we didn’t speak about my partnerships or my brand whatsoever, other than the fact that I shared that I feel Lyme has been a gift for me to connect deeper with myself on a spiritual level, and teach me what truly matters in life (which has been reflected in my brand in obvious ways).
Again, I could feel the thick energy on the line of a journalist hearing something she wants to hear. Spirituality doesn’t always go over well in the media, in fact it can often be used to sway an audience in the direction of finding the person in question unreliable because they are deeply spiritual (i.e. in the eyes of the mainstream, “out there”). I knew that was happening, but again I felt like that’s nothing I can’t handle.
Regardless of the strangeness of our conversation it always feels nice to share from my heart about this journey with Lyme. I do so willingly and with great honesty (too much honesty in this case, I see now). When we got off the phone I texted her (as we spoke on our cell phones) to thank her for the interview, thank her for covering Lyme disease, and thank her for including me. I told her to reach out anytime if she had any other questions.
I was met with a curt response shortly after, “Thank you — I appreciate your time.” I have interacted with a lot of journalists over the years. I know they’re not always or even often in it to make a friend, but human to human I think it’s nice to be kind to each other and that response (while not unkind, yes) made me uncomfortable.
I was thinking, I just poured my HEART OUT to this woman, and this response, in response to my gushing text of gratitude, falls flat. But AGAIN, no big deal. I understand not everyone texts or even speaks as effusively as I do.
Important to note, I have worked with huge journalists for Good Morning America, The Today Show, and more who I have become incredibly close with. It doesn’t matter how you meet someone, when someone shares their soul with you, and tells you their story, you have a connection. A bond. ESPECIALLY when someone pours their heart out about a debilitating disease they are living with. NOT the case with Molly.
Also, since I read energy and feel extremely in tune with other people’s energy, it wasn’t her words that rubbed me the wrong way. It was the delivery and the negative energy behind them. It was the all around refusal to open up a friendly dialogue that made me feel like maybe this wasn’t going to be so great or even halfway decent after all.
Journalists who refuse to open a friendly dialogue sometimes do so because they know their angle before they’ve even spoken to you. They are going to twist your words, pigeonhole you, and make you sound like an idiot. Why be friendly to someone who you are only speaking to so you can use them in a ploy to further your agenda?
After our conversation I didn’t think much about the article. I am busy living my life, trying to heal, preparing for my wedding, preparing for my Lyme cavitation surgery next week, you know… doing my best to live and keep it all together even though I feel every day like I am absolutely dying.
Most days I can’t even get out of bed to walk to the kitchen, but apparently journalists like Molly couldn’t give two shits about my symptoms or anything about the actuality of me living with Lyme disease, even after speaking to her about it at length.
Then came the “fact checking”…
Then I started speaking to the fact checker for the piece, Jordan. We spoke on the phone just last week. MULTIPLE things she “fact checked” with me that I was very clear to tell her not to use, 100% ended up in the article.
In fact, everything I made clear not to focus on in the article were the ONLY parts about me that ended up in the article.
For one, she asked me about veganism and orthorexia. (First of all, that tired old topic OH MY GOD – it was 6 freaking years ago and I was 22 and barely knew who I was as a human. It’s still the only thing the salacious journalists care about in regards to me and my expansive, accomplished, interesting life. Important to note, great journalists are keen to focus on truthful subjects in my life, which yes, are still INTERESTING.)
I told Jordan VERY clearly that by no means did veganism cause orthorexia. I told her very clearly that if they were to write that, they would be like all of the media outlets who falsely wrote and said that about me for years and that it was completely, 100% untrue.
I also wondered, why is this even coming up? Of course now I see it was coming up because Molly chose to focus on me shifting my brand from The Blonde Vegan to The Balanced Blonde and transitioning from veganism in order to make me look unreliable. A girl with an eating disorder now has Lyme disease, ta da! Of course she is making it all up for attention.
Gag me. Now. Oh my god.
The second thing Jordan asked me about to fact check was whether Target is one of my sponsors. I said no, they are not. We worked together one time, but I have a big range of longterm sponsors who are actual sponsors of my brand. One-off partnerships are not considered sponsors of my brand, and they are especially not one of my sponsors because the partnership was not even with Target, it was with Who What Wear’s brand JoyLab that is sold at Target.
So after explaining that… BOOM. What ends up in the magazine? “Lyme has also brought the Balanced Blonde to a new audience. Instagram is home to an active Lyme community, and many of Younger’s photos are now hashtagged #lymewarrior; they receive hundreds of comments and thousands of likes. Target is among Younger’s sponsors, suggesting that perhaps Lyme content isn’t a bad way to reach wellness-minded American women.”
Truly sickening. Are you kidding me, Molly Fischer? You chose to include THAT, of all things? After everything we discussed on the phone, you want your readers to know that I have “gained followers” from having Lyme? That is disgraceful. I have LOST followers from having Lyme. I have lost tens of thousands of followers because my content is no longer active, upbeat, oriented around running and yoga and healthy food. You know, the things I built my BRAND around for years that I can’t do anymore because I have a fucking debilitating disease?
Also, I don’t care that I have lost followers over having Lyme and posting about Lyme!!!! THAT IS NOT WHY I DO WHAT I DO OR WHY I SHARE WHAT I SHARE. I am a human being, not a brand. Perhaps you think that receiving hundreds of comments and thousands of likes makes me feel less sick, less bedridden, more alive? Perhaps you think that is what matters to me, versus sharing accurate information about Lyme disease with the world?
But of course you instead chose to focus on my “Lyme content” gaining popularity on social media. That the hashtag we use #lymewarrior to unite the millions who are suffering and give us a community so we don’t feel so god damn alone in our beds every day is something we do for show?
So yes, although the fact checker was well aware that I wasn’t comfortable with Target being named as a sponsor, and was well aware that Target is NOT my sponsor, that is exactly what was written about. Why are things fact checked if only to be ignored?
Among the other things Molly chose to focus on, INSTEAD of anything having to do with me having Lyme disease?
– that the top Google searches for my name are “Jordan Younger net worth” and “Jordan Younger age”. Writing about my net worth being searched is akin to her writing about Target being my “sponsor.” I read between the lines, Molly. You want your readers to think I am making the big bucks from this social media career. And guess what? I am. I know that threatens you for whatever reason. And guess what else? I have been for years, long before I ever got sick. And guess what else? Every dime of what I make goes toward getting treated for Lyme. And even THAT has been happening since before I had a diagnosis, because it’s impossible to live life or even get out of bed with this much pain and NOT get treated.
– “She also goes on weeks-long “water fasts” at healing centers. Her doctor doesn’t send her on those; she does them on her own, but she has met fellow Lyme patients that way. When you fast, “it starves the toxins,” she explained.” Even though she knows full well that I have done two water fasts in my life, and there are FAR more benefits than the out-of-context quote you pulled from me there to make me look like an idiot. Again, why did you even mention it? To make me look unreliable, crazy, kooky, not to be believed.
– How about this quote? When I said this one on the phone, I could hear the salacious journalist in her getting excited all over again. “I mean, I’ve said things to my family like, ‘Well, part of why I’m sick is because of the pressure that you’ve put on me my whole life.’ And my mom’s like, ‘Well, aren’t you sick because of a tick bite?’ And yes, that’s all true.” True, and when taken out of context again makes me look silly and in doing so, makes the suffering I have endured AND that my family has endured because of my illness seem trivial and trite. What about the parts of my illness I shared with you that actually have anything to do with having Lyme disease — you know, the subject of your article?
– Oh and how about this?! “Younger did ozone for nine months or so, and it always made her feel worse. “At first I was so okay with the Herxheimer reactions,” she said. “It’s part of healing. But I reached a point more recently where I really do just want to feel better in my everyday life.”” Again, taken out of context Molly you are trying to make ozone look like a treatment that doesn’t help people, when I fully told you that it massively lowered the toxic load in my body. If you want to use my words out of context AGAIN to make me look like I am a valley girl giving half-assed explanations of things, you are NOT BEING A JOURNALIST. You’re actually engaging in defamation and slander. Ozone is an amazing treatment saving lives, and because of journalists like you perpetuating this insane notion that it’s not, it is not covered by insurance which is why (as you wrote at GREAT LENGTH about in your article) Lyme disease runs people into the ground with their finances.
– The orthorexia component is so inane I won’t even go there. So irrelevant and yet another one of Molly’s ploys to make me look unreliable.
– “Lehman tells Younger that she has “every right” to feel bad (“which was so validating and exciting,” Younger says). It all makes sense to her in retrospect: her lifelong food issues, her orthorexia. “I was dealing with these Lyme bugs,” she says, “taking over my body and eating all my nutrients.”” This did not come from my conversation with Molly. This came from my podcast episode about being diagnosed with Lyme. And if the only words you took from that episode were that I was “EXCITED” to be diagnosed with Lyme, again you are being a coldhearted, defaming journalist. You know exactly what those words imply when taken out of context. There were so many nuggets of wisdom, truths about suffering from chronic illness, so many accurate points and insights about what it has been like on the long road to getting diagnosed, that were NOT included or even considered by you.
And there we go, that’s what Molly focused on about me in the article. Disregarding everything I spoke to the fact checker about (why did I waste my time doing that if nothing I shared was included or validated, Jordan?).
And then there is this…
“Spend a while browsing #lymewarrior on Instagram and what you find looks like wellness content at first. There are selfies, shots of food, talk of toxins, exhortations toward self-care. There are more extensive arrays of supplements than you might expect. Then the IVs snake into view. There are hospital gowns and seats at outpatient-treatment centers and surgically implanted ports displayed with pride. This is wellness predicated on the constant certainty that all is not well.”
That has got to be the most insulting, degrading, offensive thing I have potentially ever read by a “writer” in my life. WITH PRIDE? I am actually tearing up right now thinking about myself and the millions of others spending their youth in the mother fucking hospital, and being faced with sick, threatened writers like you telling us we are PROUD to be there.
You know what we are proud of?!?!?! OUR STRENGTH. OUR TENACITY. OUR ABILITY TO GET OUT OF BED EVERY DAY AND FIGHT FOR OUR LIVES. The strength we have every moment of every day is something you will sadly never understand, because it’s clearly not in your nature or DNA.
You’re right, we are proud of ourselves for the grace in which we handle our disease. Instead of killing myself or letting this disease kill me, I have decided to spend all of my money and time and energy on treatments and surgeries and medications and supplements to get better. And in the same vein, I have gathered even MORE strength and tenacity and grace and grit to SHARE MY JOURNEY PUBLICLY. As has every single person who has shared their #lymewarrior “content” (gag) in the midst of the shit they are going through every single day.
I thought that was all bad. I didn’t think it could get worse.
Then I saw the part about my doctor, Dr. Erica Lehman, a true hero. A Tick-Borne Disease Specialist and board certified ophthalmologist. Molly writes, “…leads inexorably to the offices of Dr. Erica Lehman, a Beverly Hills ophthalmologist practicing as an LLMD. (Her biography lists fellowships in corneal surgery.)” That passive aggressive nudge at trying to dismiss her credentials is so palpable it makes me physically ill.
I know personally of several people who likely would have died if they didn’t end up in the care of Dr. Erica Lehman. I probably would have as well Molly, and you know why? Because I wouldn’t have been able to live like this any longer, getting sicker and sicker and sicker. It is not uncommon for Lyme patients to fall into depression and ultimately commit suicide because the pain of living this way is so debilitating. I could have seen my life going in that direction if it weren’t for Dr. Lehman. I don’t share that on social media because it is so personal and dear to my heart and would break my family’s souls, but guess what? You and your sick journalism have pushed me to that point.
And guess what else? Based on your article, you would probably tell me I need anti-depressants for that. Which is everything that is wrong with our world and our medical system right now. (Not anti-depressants, but telling Lyme patients their illness is mental.)
What about my symptoms of Lyme disease that we spoke about at length, Molly? The debilitating fatigue, the full body hives, the bedridden condition I have been in for 2 years, the brain fog, the joint pain, the misery????? Oh yeah, you wanted to focus instead on me being unreliable and a social media influencer posting “Lyme content” (FYI, that is not a thing).
What threatens you about me being a social media influencer and blogger with an incredible audience of supporters? What intimidates you about people who are sick? What intimidates you about doctors who are saving lives?
Beyond the parts of the article about me and Dr. Lehman, the article itself is full of slanderous statements, inaccurate portrayals, and straight up passive aggressive and INTENSE discrimination against people with Lyme disease.
Friends of mine and massive inspirations like Porochista Khakpour and Lena Dunham were mentioned in an extremely unflattering light, and more inspirations and well-known figures in the Lyme community like Yolanda Hadid and her children were mocked as well.
Doctors doing amazing things were minimized. Doctors who are uneducated about the true dangers of Lyme were legitimized. Even Reiki was written about heavily in a way that minimizes energy medicine. (We won’t even go there. Not even fucking worth our time.)
The whole thing is truly mind boggling. Sick. Disgusting. Criminal. Hard to fathom.
So… why did this article happen?
I have some theories. For one, I think writers like Molly Fischer (similar to Apoorva Easdon for the New York Times just a few short weeks ago) have a problem with people who are chronically ill, for whatever reason. What I have learned on my healing journey is that everyone suffers from deep rooted issues, some of which they themselves are unaware of. Whatever deep rooted issues this writer and whomever at NY Mag were also behind this have with chronic illness and people who are sick, I do not know. I do know their issues most certainly fueled the fire behind this article.
Secondly, with the new investigation about the Pentagon potentially releasing weaponized ticks in the 50s, 60s, and 70s that would have caused the spread of Lyme disease, it doesn’t surprise me to see large media outlets like the NY Times and NY Mag banding together to promote the nonsense idea that no one is really suffering and that Chronic Lyme simply doesn’t exist.
As Molly writes in this article, one of the patients who thought she had Lyme simply “left Lyme,” implying that Lyme is a cult, or a church, or a religion, or otherwise.
Similarly, the writer of The NY Times article about Chronic Lyme not existing, re-tweets things on Twitter about Lyme disease being a cult. This is the same woman who deleted her Instagram when she started receiving unsettling comments about her article. There is no pride there. No strength or grace. The kind of pride, strength and grace we who fight and suffer exhibit and experience every single day.
All of the above is truly horrifying and criminal.
As far as other theories go, I am pretty dumbfounded as to why anyone would want to portray the fact that Chronic Lyme doesn’t exist, or act as if anyone suffering isn’t truly suffering. As many have pointed out, Lyme disease is a fascinating yet deeply unfortunate epidemic all on its own, without these crazy spins on what it “isn’t.”
Also, as many have pointed out, only those as fortunate enough as Molly Fischer or Apoorva Easdon to be in good health would be able to write an article like this. Until you have suffered from chronic disease or watched someone you love suffer, or I don’t know, experienced basic human compassion on a deep level, can you maintain or even perpetuate such dangerous points of view. And I hope, truly, that they never have to experience this devastation and pain in their lives as many of us have.
As far as titling your article, “What Happens When Lyme disease Becomes an Identity,” it’s sick that you think we want to identify with being ill. Lyme is a disease, like cancer, like heart disease, like diabetes. Would you write a slanderous article diminishing any of those patients’ journeys? I don’t think so. (And I freaking hope not.)
I could go on forever. There are so many things wrong with this article. As far as my personal attack in this article, I will get over it. I appreciate the support so so so much and I want everyone to know that while I am devastated that my words were twisted and that I unwillingly contributed to this monstrosity of “journalism” (the furthest thing from journalism I have ever seen), I still feel unshakeable joy and gratitude for MY LIFE exactly as it is.
I don’t care about being portrayed like a dumb girl in the media. The media’s view of me means nothing to me. It’s that my words could be twisted in such a way to continue to perpetuate the dangerous and sickening notion that Chronic Lyme is not serious that really irks me and will never, ever be okay with me for even a millisecond.
Molly Fischer, you deserve zero more seconds of my time or energy. Of which I have very little of to begin with. It is also not lost on me that your fact checker, Jordan, furthered this mess by keeping in much of what I said was not okay to share. (Isn’t that illegal? Maybe if it was worth it to me I would take legal action — but it’s not worth my precious time or energy or headspace.)
But this issue is not going away. I will not stop talking about the issue at large, which is that Chronic Lyme is deeply misunderstood. And for anyone reading who may have thought at some point during this post that I am just adding fuel to the fire by writing about this, then I can only assume that you too have never walked in the shoes of a chronically ill individual or the family member of someone who is chronically ill.
Because when you’ve been here, you get it. We are fighting for our lives. This is important work, necessary work, soul level work. I will always turn the other cheek when something silly or untrue is said about me, no big deal. But like I said at the start of this post, when you mess with me in regards to my Lyme journey, you are messing with everyone who suffers, and you will NOT get away with it.
Judging by the thousands of messages I have received since sharing about this on Instagram stories last night (yes that’s right Molly, I do receive thousands of messages about “Lyme content” because the amazing people who follow me are HUMAN with HEARTS and many of them have been there for 6+ years, long before I EVER had Lyme or any diagnosis whatsoever), I am not alone in feeling incredibly maddened by this article and the excruciatingly false ideologies behind it.
What I do know is this…
Kind people don’t twist people’s words to fit a certain agenda, ever.
People who have experienced the light, who live in the light, and who feel true happiness and love in their hearts do not spend their time writing slanderous articles about people who are suffering, dying, and living their lives paralyzed or bedridden.
Lyme disease is a growing epidemic and if we don’t continue to raise awareness and find more affordable cures, soon enough it will be impossible not to know someone very dear to you who has Lyme disease and suffers deeply from it.
When you have true joy and love in your life, nothing can touch you. This article is a blip on my radar. I share this post not for my own self validation or to make myself feel better after being slighted on the grandest level, but because this is important work and I feel it necessary to speak up for those of us in the Lyme community who suffer daily.
Joy and love are all that matters at the end of the day, and I am beyond lucky to have incredible support from my friends, family, fiancé, and so many of you.
The media has a clear and calculated agenda. It may have to do with the weaponized tick investigation and it may have to do with coldhearted journalists wanting to turn something very real and true into something salacious and “juicy,” or it may be both.
At the end of the day, I know that people who are unhappy make themselves feel better by telling themselves others are crazy.
To stoop low enough to regard chronically ill people as crazy for being chronically ill is BEYOND me, but it’s happening and it probably won’t stop any time soon.
We are stronger than this. We are stronger than them. We are kinder than them. We will rise above this, and only the truth wins out in the end.
Karma is a real thing. Luckily for those of us who aren’t slandering other people and their health journeys in the media, we don’t have to worry about anything but positive karma flowing our way.
I personally will never willingly speak to the media about Lyme disease again, unless I know the writer on a deep personal level and know that the angle is 100% accurate and well-intentioned.
I love all of you, and we will let this pass!! This will take up no more of my energy or headspace. And yes, I do plan on sending this directly to NY Mag, The Cut, the fact checker, and the writer of this article.
With that, my weekend will be full of love, rest, and high vibes. I have no space for individuals like Molly Fischer or anyone in her camp in my life. What I do have space for is endless love, peace, healing, joy, and eternal wholeness. I will heal. I am healing. You’ve only seen the very beginning of the “pride” I have in this healing journey and the miraculous things that will come from my full, recovered, healed self.
BECAUSE of this journey I am strong.
BECAUSE of this journey I have the joy and the great honor of speaking up for others who are suffering.
Most of all, I have the joy to tell my own truth. No one can do that for me or take that away from me. Idiotic journalists who share slanderous information only add fuel to my extremely passionate, joyous, strong, unshakeable, healing fire.
All of my love and then some,
P.S. I have not linked the article because I refuse to support it in any way or further the views it may have received. But if you’d like to find it on your own, be my guest! It’s pretty easy to find. 🙂 MUAH.